Sorry I'm posting so much, I just keep getting worse and confused

So as you may know, recently my worst nightmare came true. I had the Restech pH probe which showed I allegedly get reflux at night. At the same time I have a host of "spit-test results" which show I don't get reflux at all. This has left me utterly confused as to which diagnosis is correct. The same goes for the specialist I've seen, who has seen fit to put me on another new type of Proton Pump Inhibitor (PPI), despite me being on 4 other types before, and despite all the others making me worse.

Once again, after 5 weeks of taking the Esomperazole/Nexium, my symptoms have become unbearably bad. There are even new symptoms, and some that I thought I was finally rid of. Diarrehea, burning throat, nausea, small-often burps, dry mouth, no saliva and trouble swallowing. Most notably, I have intermittent pain in my ears (it keeps switching sides), a feeling of liquid in said ears, and a horrid lump of mucus in my throat that sticks EVERY time I swallow, even if all I swallow is my own saliva... The lump only goes away with bread, and even my Gaviscon Advance and Alkaline water make it much worse. If I don't do something about it, it blocks up my throat and it becomes hard to breath.

On one hand, I know that anxiety can cause some of these symptoms. On the other hand, they ALL match up perfectly with reflux - that terrifies me, as I would give anything to be free of this horribly painful illness. There's no cure for reflux besides these meds, and they aren't working for me. All the lifestyle and diet changes in the world don't help me either. I've even resorted to trying unproven remedies, for example vitamin D3 supplements for over 6 months, to no avail. Do I just give up hope of ever getting better? Reflux has already cost me my dream job and has had a severe negative impact on my relationships to my friends and family. Is it going to be the death of me too? I honest and truly cannot live like this.

1039smooth said...
Do you take anything for anxiety? Can you try something other than Nexium?

I had a barium swallow show I should have no issues swallowing, but I do. When I had it two weeks ago, I could swallow fine. I'm not sure what could change in two weeks.

I've tried 3 different anti-depressants in the past, but while they reduce some symptoms, they make others, like my burping, increase. It's a no-win situation. :( The ear pain is worse today; kicks in when my throat is at its tightest.

Daxter,

If the restech test shows that you are only refluxing at night could this be why the peptests don't work as they are done during the day?
If this is the case would you try the reza band that will be coming out later this year in the USA to see if that helps?

GC1pink said...
Daxter,

If the restech test shows that you are only refluxing at night could this be why the peptests don't work as they are done during the day?
If this is the case would you try the reza band that will be coming out later this year in the USA to see if that helps?

I thought of this during my sampling, so I took some samples in the middle of the night and immediatly upon waking. They were negative too, and since pepsin sticks around for a long time according to Dr Kouffman, I doubt it would be overlooked or neutralised in my sleep, else I probably wouldn't have LPR at all..! :D Also Restech showed my pH never sank below 4.1 and I never had longer episodes than an average person... I think.

Andy1986 said...
Anxiety can have a big effect on reflux, so in periods of high stress or worry it is likely your reflux is worse and you experience symptoms. Anxiety also heightens sensation so symptoms feel worse even if they aren't.

I've been through extreme periods of anxiety and my reflux was absolute hell. Once you address the anxiety the reflux will likely get better, although its a slow process. I found relaxation exercises really helpful for both reflux and anxiety.

If your symptoms are worse on PPI's then I think you have to come off them and just stick to basic things like Tums and alkaline water.

Have you tried sleeping on a wedge at night? I found that helped with nighttime reflux. It took a while to get used to but I actually find it more comfortable than sleeping flat now.

I use a wedge yeah; it actually helped me with my old insomnia problem somewhat. Do you know if anxiety alone can cause reflux, or just worsen it? Evidence is somewhat hard to find ^^;

I had a couple of techniques that I have found most effective.

First in times of actual panic, when I feel like I'm goin to have a panic attack I pick an object at random that I can see, then I describe it out loud in detail. After a few minutes then sense of panic has subsided.

he second isn't for panic, more for general anxiety and periods of pain or feeling unwell. First I find a position I know will ease the discomfort, for me it's lying down with my head and knees supported by pillows, but it can be sitting. Then I will either use an autogenics tape, or do it in my head. Autogenics is a system of making different parts of your body relaxed by feeling warm or heavy. It takes a bit of practise but once mastered you can actually send blood to different parts of your body to make them feel warm. I think this helps with pain as it reduces the inflammation in affected areas by keeping blood away from them. It is used by fibromyalgia patients who have no other relief from pain with great effect. A great side effect of it is its very relaxing, coupled with pain relief that can make a big impact on how u feel.

It is difficult to do in periods of more pain and sometimes u can feel restless when trying it, but when you learn to ignore this and passively make yourself do it by the end you will be much better.

I bought a book on amazon that took me through he learning of it, I also did deep muscle relaxation tapes which help u master it too. U can probably find some on youtube.

Hi Dax,

You should really consider getting off the meds.  If you are not well and you are taking them, then why be on them?  I was on them and stopped because I was worse on them.  I had the same symptoms you have while on them.  Once you are off them (and get off slowly), it will take some time to get better.  Be patient.  You will have to eat well and relax.  Excercise.

My problems got worse with Nexium.  I had mild esophagitis.  I am now off and slowly getting better.   Please consider getting off Nexium.  Just because you have some reflux does not mean you need to be on the med. 

Good luck.

Dax - If you have reflux (and I think you really need to be off meds for six months to see what happens), it may only be mild and some mild over the counter medications can work.  The reason no one will do surgery is probably because you don't qualify based on testing.  You can't convince a doctor to do surgery on you.  You really need to wean yourself off the meds and relax.  You need to be patient.  Your esoph may need some help while weaning.  I am using Gaviscon Advance liquid from the UK.  Too soon to tell if it is helping.  You may need Carafate.  I don't know the history or how this started for you, but you seem to be looping.  Doctor gave you a strong PPI that you may have not needed and now you are worse.  Wean off the meds.  Eat a very bland diet and only drink water. 

Daxter - the combination of supplements in study that javery linked to above sound very intriguing. I am going to try them myself. I am already taking some of them. I would give that a try after getting off the PPIs.


As for stress - there's plenty of evidence it can cause, not just aggravate heartburn. Here's one link. I'm sure you can find more:


http://www.med.unc.edu/ibs/files/educational-gi-handouts/Stress%20and%20the%20Gut.pdf.

Daxter said...

 
I use a wedge yeah; it actually helped me with my old insomnia problem somewhat. Do you know if anxiety alone can cause reflux, or just worsen it? Evidence is somewhat hard to find ^^;

 

Hi Daxter,

I hope you are feeling better. I have the throat thing also.I think that thinking about it a lot, we get more stressed out. Is like a bad circle, the more we worry, the worst it gets. Does that happen to you? 

The esomperazole has been stopped for about a week now; I'm not getting rebound as far as I know, but my throat is getting worse and worse. Every swallow contains thick mucus; I have virtually no saliva, and my only relief is to spit constantly. Gaviscon Advance worsens it, my diet is still as bland as it gets, alkaline water is all I drink and I'm still on vitamin d3. Why would all my efforts have no effect?! I can't take my mind off it because I need to swallow, and every swallow makes it worse. It isn't globus alone because its linked to the mucus and it radiates to my ears and back. It's making me short of breath too as it clogs my throat. Every google search says "reflux." Incurable, torturous reflux.

WHAT THE HELL?!?!?!?!!!??!????! I can't call these symptoms anxiety because they happened to start the one night I tried to resume my normal diet. So I can never enjoy what I eat, drink and do ever again in my life, because one day of laughing with my friends means one hundred more of reflux. I can't live a full life like this!! I don't even have a basic level of quality of life right now. I'm sorry but I need to say this- I would be happier being assisted in dying right now than living a full life like this; I don't have the guts to kill myself, but I refuse to live like this. If I can't have my pain-free life back after everything I've tried, I don't want a life at all. Dramatic yes, but very true. I've literally been crying to myself, begging for a miracle from any gods that happen to exist. Please, someone get rid of my reflux. I don't care how you do it, just do it.

Post Edited (Daxter) : 5/10/2014 1:05:36 AM (GMT-6)

Hi everyone!
I had cough and shortness of breath, with shoulder back pain. I had and xray and the doctor said it not my lungs. She said it might be GERD.

After finishing a week of antihistamine and Pantoprazole, the shortness of breath and cough
disappeared! (it was last week)
But after 3 days (without medication)
The cough and dyspnea came back! I don't know if this is something else or
the gerd is still there. The burping and lump-like in my throat is on and off but I don't have heartburn. I sleep well! I dont have difficult time while I am sleeping! My cough and breathing dont bother me at all. But when I am awake, these symptoms start to appear especially when im not busy! If I am busy talking to someone or doing something, I forget about it. Is this gerd? Anxiety?
Or what?

Thank you pazshalom!
The post has been very helpful for me. When I get anxious, I always remember not to, I relax and convince myself that I will be ok. I take deep breaths and the anxiety seems to go away. But it's really tough because from time to time the thinking and worrying still manages to come back.
More practice! :))
As for now, I am constantly focusing on thinking positive. I don't want to stay awful whole day, and my fanily is also starting to worry about me. And if they worry, I worry more!

I,too, am not sure about it. As for me, if i talk to other people, i rarely notice my symptoms. That's why i prefer to walk every morning and chitchat with neighbors. As soon as i go home, i notice my breath short. The lump in my throat usually appear after i eat lunch or dinner.